View Full Version : Catch 22

07-29-2011, 08:59 PM
Hello coolest people ever!

So I've got this catch 22 going on. Oh, I should have warned you this is going to be another predisone thread. So here's what's up:

Along with all The Mess, (in fact, it's what 1st made me start to figure out The Mess,) I have back weirdness. I have an extra vertebrae, a lumbarized S1, a decrease in bone marrow signal (which is so far NOT cancer), a broad-based midline and right paramedian disc bulge that effaces the anterior sac, and a moderate midline and right disc protrusion. It hurts. You know, the pain so low down in your back that it feels like it's right in the middle of your butt cheek, that shoots down your leg.

The thing is, as I taper the prednisone, the back pain becomes unbearable. I was just checking online and a lot of med sites say steroids are the #1 treatment for bulging discs. I've been really proud of myself, because I've made it down to 10mg a day, and in two days I'm tapering to 5mg. But I'm also worried about what this is gunna do to my spine. The pain is super intense, and often lands me flat in bed. I definitely can't work when I'm feeling like this, because of the pain meds I have to take. Oh, and I also have hypothyroidism, and the pred messes with that too. But without it I can barely move! I'm totally not trying to be dramatic. I mean, I move, but with a terrible wincing look on my face.

This is absolutely something I'm going to talk to both my docs about. But I was hoping some of you had a similar situation, and could give me examples of what can be done. Mama recently sent me a joke about a patient asking her doctor how long she was going to live. He asked her if she smoked, drank, partied, stayed up late, had multiple sexual partners, etc. She answered no to everything, and he said, "Then, what's the point?" I'm wondering now if having a good quality of life (right now I absolutely do not) is worth the consequences of longterm steriod use.

Thanks guys,

07-29-2011, 09:21 PM
Hi Sharpie, I can tell you I had back surgery for a disc that tormented me for years and finally bursted. It was the best day of my life to have it out. They said they left two bulging disc in there as it is better to have two lousy spare tires than none and then fuse the spine.

After the surgery I still had muscle spasms and when I sit for nearly one hour my siatic never hurts down my butt terribly. I found lyrica or elavil to both work well to ease the pain. I am on 5 mg of prednisone daily as my rheumy believes it is what keeps me fairly stable from a flair. I sure hope you can find some relief, because the pain is torturious. I also found that keeping thinner(which is an oxymoron with steroids), is important. A firm tummy also helps hold my back up and relieves the back from doing all the work. I am walking daily again and holding my stomach firm for the whole walk. Eventually it gets firmer and my low back problems almost disappear.

Have they tried injections in the site? This didn't work for me but I have heard it did for others. I truly hope they can help you soon. Elavil worked for 10 years for me, but boy I craved sugar on that. Lol

07-29-2011, 09:27 PM
Oh Sharpie... this is something that I deal with daily. I am on 40mg steroids daily (down from 60 and 4 shots in the last 5 months) and my body shows it. Anyone that knows what steroids do to a body could pick me out in an instant. I try to go down but I usually end up in the ER or at the doctors and I get a shot). I know how bad steroids are for my body, my bones and me in general but getting lower makes me hurt so badly that I can barely move. on top of that I end up with all the usual Lupus stuff and there is no life in that. I had a doctor tell me once that "steroids will make you feel good all the way to the grave". Harsh but kind of true. I suffer with the same place that you are. Which is a better place to be. Off the drug that I know is bad for me and being in a massive flare or taking the drug, knowing what it is doing to me, but being able to enjoy the day a little more.

If you figure out the answer to your question please let me know. I am trying to find the answer myself.

07-30-2011, 01:17 AM
my wife has bad back problems too.
she recently had her first knee replacement.

in preperation for her knee replecement, she had a steroid injection into her disc.

it was great. second day no pain.
it is still good almost 2 months later. not perfect now, but very good.

talk to your doctor about the injection. our difference is impressive.

07-30-2011, 10:41 AM
Thanks you guys, excellent advice, as always.

I'm a little creeped out at the idea of a needle in my spine, but it can't be worse than the bone marrow biopsy, right? And if a pill does such wonders for the pain, I can't imagine how great directly applying the medicine to the site would be. I'll definitely talk to my doc about this option.

I'm getting ready to change PCPs (GPs) again. I just can't make the current one understand, or even try to understand, what my AI issues are, and how they need to be treated. Every time I see him he directly contradicts what my awesome Rheumy says, so I'm giving up on him. He's fired!

Oh, and hey! I've been seeing a lot of posts about how expensive getting our kind of care can be. I don't know if I just got incredibly lucky, or if every care-giver does this. I told my Rheumy's receptionist, overt the phone while making my first appointment, about how I would be self-pay because of no insurance, and I asked her if they had any kind of assistance program. When I got ready to pay for my first appointment I was sweating bullets, wondering if I had enough to cover the visit. But it was $25! Seriously! Every time I see this very qualified, and super-important Rheumatologist, it's only 25 bucks. I've found that most hospitals and clinics have financial assistance programs, and the people in charge of them are extreemely helpful. All you have to do is ask. It can be kind of humiliating, telling a stranger that because of the way Lupus has jacked with your life you only make $200 a month, but it's well worth it for the assistance they can provide. I'm also on my local hospital's assistance program, so a visit to any of the doctors in their network is only $15.

There's no way I would have found out what was the matter with me if I would have had to pay base price for everything. I got one statement from the oncologist that said I owed $7,000 for the bone marrow biopsy and labs, then under that it said "BCMH assistance applied, patient co-pay $30." Phew!

07-30-2011, 08:54 PM
i know it is never easy telling people you are broke.
i had a real hard time with it, for a couple of years.
thank you for sharing about the assistance programs.

08-01-2011, 09:34 AM
I saw that we've recenty aquired a few new members who have had lupus for many years. So I'm bumping myself back up to What's New to see anyone else has thoughs about this. Cuz it's bugging the crap outta me. Thanks guys. = )